Dear sentient creatures who require nourishment in various forms,
This morning I had several miniature battles. First was the battle of getting out of bed on a cold day. Each time I thought, “I should really get up,” I burrowed a little deeper into my blanket burrito, because I love to be warm and hate to be cold. I eventually convinced myself that the sooner I leave the warm, the sooner I may return to it. Then there was the battle of how to style my short hair, which I never seem to win. As my pain and sickness began to rush into my body as they do every other morning, I went about the house continuing my morning ritual.
As I put my lunchbox together, I realized something that I believe I have felt for years; I really, really fucking hate having to pack my lunch. In fact, I loathe the action so much I actually did the dishes before packing so that I could put it off a few more minutes. That’s how much I despise having to deal with my lunchbox.
Being the Eleanore that I am, of course, I became obsessed with trying to figure out why I am so loathsome about having to pack my food. I knew it wasn’t because of the food I was gathering; I’ve become a pretty great chef (at least, so I think).Finally I realized the reason I constantly duel with my lunchbox is because most others simply don’t have to, and every time I have to do so, it yet another reminder of how different I truly am.
Not only do I have Celiac disease, but as a symptom of both that autoimmune disease as well as Chronic Fatigue Syndrome, I have 13 other food allergies. About 80% of those allergies can be potentially fatal, as proven by my 16 episodes of anaphylaxis. As you can imagine, having all of that working against me makes it extremely difficult to eat anywhere save for my own home. No matter where I go or for how long, I must always have enough food to get me through whatever the day consists of.
Back home in California there was a magical place known as In-N-Out burger. It was the only place in California, aside from Zest Bakery in Menlo Park, that I was able to eat at. As much as I loved Zest, it was quite far away from my home, and there was only one of them. The entire state was polka dotted with In-N-Out Burgers, which meant that regardless of where I went, at least for a few meals, I could count on them. While eating burgers and fries isn’t the healthiest option in the world, it was nice to have them to rely on if I was too tired or accidentally messed up a meal plan (which I still do more often than I should).
Now that I live in Missouri I am without my beloved double-double. There are a few wonderful bakeries here that cater to gluten free people, but as much as I like to think it’s possible, I can’t survive on cinnamon buns and cupcakes alone. Wait…can I? No. No I can’t, but a girl can dream.
It’s true that it is probably better for both my health and my bank account to bring home made food everywhere I go, but that’s not even the part that troubles me. What I find myself so frustrated at is the fact that as someone with a plethora of chronic illnesses, I don’t have much of a choice. I either bring my own food, don’t eat at all, or take a risk likely to land me in the hospital. Out of those options, clearly, bringing my own food is the safest.
Those who are fortunate enough to not have Celiac Disease, severe food allergies, or other illnesses that restrict their diets so severely often are not aware of how privileged they truly are. An average person can eat whenever and wherever they want and they don’t have to talk to managers or call ahead only to still be left without anything safe to eat. They don’t have to deal with the anxiety of trying something new, wondering if it will ruin their day and leave them hospitalized. Average people also have the luxury of getting food already prepared from any place they wish on days they’re sick, exhausted or have been running around all day. On my worst days, when I can barely walk, if there isn’t food ready from a different day, I either have to cook or beg someone else to for me. There is no way around it. If I don’t cook, I don’t eat. Even hospital food is unsafe for me to eat; for every night I’ve been in the hospital, I’ve had to either starve through it or someone close to me would have to rush to get me a makeshift bunch of meals.
The last few years I have become truly passionate about cooking and I’m thankful that I have been blessed with some of my grandmother’s gift for making wonderful meals. I try not to dwell on the negative and keep looking ahead, but on days such as these when I’m burned out, I can’t help but wish I didn’t have to cook. Nearly every time I explain to someone my restrictions, the first thing they ask is, “what do you miss eating the most?” I come up with some random answer, but in reality, there isn’t any one food I long for. Rather, it’s the ease and simplicity of being able to go to a restaurant or being able to order food at home that I miss the most.
Now that all the gloom and doom is out of the way, rejoice, for this post isn’t totally hopeless. When I was 15 I began to suffer from anaphylaxis, and because many times the trigger wasn’t clear, I was told to stay away from many foods just in case. When I was 18, my allergen list was up to 13, and I was then diagnosed with Celiac Disease, and my foodie personality said, “peace out!” as it skipped town. My entire world had begun to revolve around food, yet eating was a living nightmare. Everything either had something in it I could not have, and even if I could have it, the anxiety of possibly having a Celiac reaction or an Anaphylactic response terrified me to my core. I was hungry and miserable sitting in a house full of food that I could have none of.
As I began to understand my illnesses more, got medical help and learned more about my special dietary needs as well as how to cook in general, things got better. I began to take pride in my cooking, and when I succeeded in making something new, I was ecstatic, singing and bouncing about my kitchen. Oh, who am I kidding; I still sing and bounce around my kitchen when I make something delicious, even if I’ve made it a thousand times before. I just love food.
Though it took an inhuman amount of patience, slowly but surely I started to enjoy what I was eating again. I went from only eating plain chicken and rice for a year straight to being able to cook beautiful dishes from all sorts of cultures including both of my own. I wouldn’t say I’m good enough to be an Iron Chef or anything, but I’d be lying if I said I wasn’t proud of myself for how far I’ve come.
For those of you newly adapting to life with dietary restrictions of any kind, believe me when I tell you I know how discouraging, scary, and frustrating it can be. While it’s never truly effortless, I promise you, with time and work you will get better at managing your diet and will once again be able to enjoy your meals. While it’s understandable that you may become exasperated, don’t give up for good. There are some Celiacs, much to my horror, who still eat whatever they want. Personally I think this is an incredibly idiotic thing to do, and I don’t know how they do it when the times I’m unlucky enough to eat something with gluten I vomit, am flooded with pain, get a horrible rash all over my legs and am rendered basically useless for the next few days.
It certainly sucks a bit to sit in a restaurant with friends or family and not be able to eat while everyone else is. I have learned that my desire to fit in does not outweigh my desire to remain healthy and not hospitalized. It’s difficult to be different, but once you get the hang of your new life it is highly rewarding and your body will just love you. I never want to experience anaphylaxis or a Celiac reaction again. Ever. If that means having to pack my lunchbox every time I go leave the house for a long period of time, then it is worth it. Maybe it will help if I just get a cuter lunchbox.
Would it be weird for a 26 year old to have a Ninja Turtles lunch box? And are we absolutely sure I can’t live off cinnamon buns and cupcakes?
I won’t settle, settle, settle,
You are never gonna hold me down.
So toxic, you ain’t nothin’ but a prick,
I’m the best thing that never happened to you,
Never, never, never, you are never gonna live this down,
Life’s too short, I can’t fake it anymore,
I’m the best thing that never happened to you.